We desperately need to find a cure for children suffering from Sanfilippo Syndrome. This ultra rare disease leads children to suffer brain damage, bone deformities, organ failure, and eventually death, often by their teenage years. People’s kindness is the only way to fund the search for a cure since Sanfilippo Syndrome is not being paid attention to by big pharmaceutical companies.
On behalf of JJB, In 2013 I ran my first 50-mile Ultra Marathon in Bear Mountain followed by another 50 Miler in Vermont and then the NYC Marathon.
This year I ran my first 100 Miler in Maryland, on July 5th I will run 50 miles through the streets of NYC and I will continue to run for JJB until we reach our goal of a cure while bringing awareness to this most urgent fight to help save kids like Jonah.
If everyone gives something today, then the research and studies to find a cure can be accomplished. Do something amazing and help us help these kids!! Donations are tax-deductible. Thank you!!!!!!!!!!
Jonny Lee Miller